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Living with a miracle

Meredith Drakesmith | Tuesday, April 20, 2004

Lymphangioleiomyomatosis.This name may be foreign to most readers, but all too familiar to the women who suffer from this deadly lung disease. When I was first diagnosed with this disease – LAM for short – the doctors warned me to avoid Internet searches and the devastating reality of what this prognostic entails. Clearly, as soon as I arrived home, I searched for “LAM.”Within a few minutes, I learned that there are fewer than 600 women in the United States with LAM and that on average, one lives eight and a half years after being diagnosed. The disease would gradually cause my lungs to decay and I would be plagued by more instances of collapsed lungs, two of which I had already suffered. Just a few hours before, I had been in the doctor’s office, anticipating a clean bill of health and permission to return to classes. Suddenly, my thoughts focused on a life cut short by LAM.Yet, within a few weeks, even with LAM in the back of my mind, life went on. Along with many others, I began praying that it was all a big mistake. And we found signs of hope among it all. Most of this hope comes from the LAM Foundation. The director, whose daughter has LAM, reminded me that an 80-year-old woman has been diagnosed with the disease and is still active and playing tennis.In contrast, the stories of the many women who die within a few years of being diagnosed are disheartening. LAM doesn’t follow any rules or one certain path. When most people heard I had been diagnosed, they couldn’t believe it. Like many women who have LAM, I had to respond often to those who exclaimed, “But you look so healthy!” The LAM Foundation lends crucial support to women in all stages of this disease while never losing sight of hope and the search for a cure. In December, the doctors performed expansive tests to determine to what extent LAM was manifest in my body. What they found was, well, nothing. I had no signs of LAM. It was a miracle. They had seemed so sure a few months before. When the biopsy was sent to another institution, it came back negative. No LAM, no lung disease. As much as I celebrate my results, I commiserate with those who have to wait to celebrate the discovery of a cure. Please be a part of the search for a cure by celebrating Thursday night at the South Bend Between the Buns restaurant beginning at 7:30 pm. There will be food, drink, karaoke and many festivities with a portion of all purchases going directly to the LAM Foundation.